Regret from Allogeneic HSCT Found to be Related to Disease Recurrence

In a study published in Cancer, the majority of patients who underwent allogeneic hematopoietic stem cell transplantation (alloHCT) and lived to 100 days did not report regretting their transplantation, and regret was instead found to be related to disease recurrence.

Given these findings, researchers suggested that social connectedness may serve as a protective factor against later regret. However, future work should explore regret in other patient groups and use qualitative methods to inform best practices for reducing regret.

“Considered a ‘high stakes’ medical treatment, the decision-making process and, relatedly, the informed consent process for HCT are complex,” the authors wrote. “Patients often are in a vulnerable state when asked to make decisions about treatment for a life-threatening illness that may have severe side effects.”

Researchers used Center for International Blood and Marrow Transplant Research data from 184 adults who completed the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) before undergoing alloHCT and at day 100; additional time points were 6 months and 12 months. Regret was measured using “I regret having the bone marrow transplant,” a FACT-BMT item not included in scoring. Additionally, FACT-BMT scores and regret were evaluated using Student t-tests. 

At 100 days, 6 months, and 12 months, approximately 6%-8% of the patients had expressed regret, with a total of 15% expressed regret at any time point. Moreover, regret was found to be correlated with lower FACT-BMT scores at 6 and 12 months (P < 0.001).

Higher baseline FACT-BMT and social well-being scores were associated with a reduced risk of expressing regret. Further, the risk of regretting transplantation was 17.5 percentage points (95% CI, 5.5-29.7 percentage points) greater in patients who developed disease recurrence after HCT compared with patients who did not. 

“The findings of the current study have suggested a relationship between baseline [social well-being; SWB] and later reporting regret about undergoing transplantation,” the authors wrote. “The current study results suggested it may be those who begin with lower connectedness and SWB who are more at risk of later regret, perhaps due to guilt over impacting a smaller social network.”

The researchers found that a review of the literature presented to patients suggested that those consenting for HCT often later do not recollect the risks and complications explained in consent discussions and, overall, tend to be lacking engagement with the consent education process. This lack of understanding and engagement could lead some patients, especially those who experience disease recurrence to later express regret in regard to having undergone transplantation. 

Notably, the patients who did not survive to 100 days and were therefore excluded were significantly different with regard to several sociodemographic and clinical characteristics; therefore, the perspectives of these individuals were underrepresented in the current analysis. Those who were excluded were significantly more likely to be racial/ethnic minorities, to not be married, to have higher HCT-CI, and to have lower FACT scores for emotional well-being, all of which the authors indicated have been identified previously as risk factors for decisional regret.

Additionally, 3 types of decisional regret have been described, including outcome regret, option regret, and process regret. However, the researchers were only able to formally evaluate outcome regret. 

Reference:

Cusatis RN, Tecca HR, D’Souza A, Shaw BE, Flynn KE. Prevalence of Decisional Regret Among Patients Who Underwent Allogeneic Hematopoietic Stem Cell Transplantation and Associations With Quality of Life and Clinical Outcomes. Cancer. doi:10.1002/cncr.32808.